Ed Hammond has fought Lewy body dementia for three and a half years but is not about to feel sorry for himself. “I plan to go out and live every day while the living is good,” says the Chicago area resident. “My care is excellent, from my doctors and medical support to my family and especially my wife, who I love with all my heart since the day I met her almost 42 years ago.”
His medical support includes spiritual care, thanks in part to Jori Fleisher, MD, MSCE, FAAN, an associate professor in the department of neurological sciences at Rush University in Chicago and a member of the Brain & Life editorial board. Dr. Fleisher partnered with Rush chaplain Dirk Labuschagne, MDiv, MPH, BCC, to offer Hammond, 70, dignity therapy, one of many spiritual-care therapies or methods of care. Through this, Hammond created a legacy document, in which he reflected on his life and the message he wants to leave for his loved ones.
Harvey Max Chochinov, MD, PhD, FRCPC, distinguished professor in the University of Manitoba's Max Rady College of Medicine, developed dignity therapy. It involves a conversation between a patient and a trained therapist, who asks about the patient's life, what has meaning to them, and what legacy they want to leave. The answers go into a legacy document the patient then reviews and can edit.
“It creates for people a sense that their lives have mattered and their lives will continue to matter transcendent of their deaths, that they will leave something behind that is tangible,” Dr. Chochinov says.
Another spiritual intervention focusing on a tangible legacy, Hear My Voice, uses a chaplain-led interview to create a spiritual legacy document that contains the patient's beliefs, values, and life-learned wisdom. That project “really seeks to capture the uniqueness of each person's story and to understand its significance and how it gives meaning to them,” says Beba Tata-Mbeng, MDiv, MPH, a chaplain and manager of the spiritual care department at the Mayo Clinic in Jacksonville, FL. Patients experience “the power of voice” as they talk about their lives and the legacy they hope to leave “for people to hold when they are no longer here and to remember them by,” she says.
Fulfilling a Need
Some patients struggle not so much with their legacy but rather with finding meaning in the present. Meaning-centered psychotherapy (MCP), a structured psychotherapeutic intervention, focuses on enhancing meaning and spiritual well-being at the end of life. William Breitbart, MD, chair of the department of psychiatry and behavioral sciences at Memorial Sloan Kettering Cancer Center in New York City, developed the approach, adapting the concepts of psychiatrist Victor Frankl. Dr. Breitbart's work came in response to seeing “that many of our patients were experiencing existential distress when facing life-limiting illness, and no existing psychotherapies really adequately addressed their needs,” says Rebecca Saracino, PhD, a psychologist who has worked extensively with him at Sloan Kettering.
MCP has group and individual formats; both introduce four sources of meaning: historical, attitudinal, creative, and experiential. The patient and therapist work together to identify and reconnect with sources of meaning in their lives. Using those sources “as tools to tolerate uncertainty and maintain hope and connection, despite an advanced cancer diagnosis, can really attenuate suffering and despair,” Dr. Saracino says. “MCP approaches these fears differently by helping patients recognize their ability to choose their attitude in the face of suffering. Rather than challenging fears about death, for example, the therapist bears witness to the patients’ suffering and helps them find a way to experience meaning alongside these fears.”
A Universal Approach
While “spirituality” often is equated with religion or a higher power, these spiritual therapies all were designed to help patients find meaning regardless of their faith. In the case of MCP, Dr. Saracino says this was intentional in order to maximize the number of patients it could reach.
Malenna Sumrall, PhD, a patient/care partner advocate in the neurology supportive and palliative care clinic at the University of Colorado Anschutz Medical Campus, experienced spiritual care from the caregiver point of view when her husband was in the late stages of Parkinson's disease dementia. She believes chaplains are essential for anyone with a neurodegenerative condition because they “do such a good job of meeting people where they are, [and] the comfort they provide is huge.”
The “essential components” of dignity therapy “are things that are fairly cross-cutting in terms of our collective humanity: the need to be seen, the need to be affirmed, the need to have our story heard, and perhaps the wish to leave some lingering influence and not to be forgotten by the people who will eventually grieve our passing,” Dr. Chochinov says.
Benzi Kluger, MD, MS, FAAN, endowed distinguished professor of neurology at University of Rochester, notes that people dealing with serious illness experience the same issues universally regardless of their beliefs. “In essence, spirituality comes down to where do you find meaning, how do you connect to the world and others, what values drive your choices, and where do you find a sense of the sacred or transcendent,” he says. “These aspects of personhood are universal, and neurologic illnesses challenge people in all of these domains.”
Broad Impact
While dignity therapy was originally meant as a palliative care intervention, Dr. Chochinov notes, it can apply to any situation in which personhood comes “under assault”—with terminal illnesses but also mental illnesses, incarceration, and everyday aging.
“All of us can benefit from having the time and space to think about, ‘What am I doing here?’” Dr. Fleisher says. “Sort of pause the conveyor belt treadmill of life and [ask], ‘Are there things that are consistent with what is important to me? Have I told the people who matter to me that they matter to me and what I want them to know about me?’ Because anything could happen to any of us, and I think we all care about how we would be remembered.”
Melissa Ko, MD, FAAN, a neuro-ophthalmology specialist with Indiana University Health, says her patients are not receiving end-of-life care but often must process a “new normal” after losing their sight. She recently received an institutional grant to start an integrated neuro-ophthalmology clinic at Indiana University with a chaplain included in the team.
Spiritual care also impacts the providers. Chaplains often perform patients’ memorial services, which clinicians attend many times. Sometimes, they get to see the impact of their help. Dr. Fleisher attended a funeral where the patient's family read from his legacy document as his eulogy, which she says was “incredibly meaningful.”
Occasionally, the effects extend even farther than anticipated. When Vladimir Corea, MDiv, oncology chaplain at the John R. Marsh Cancer Center at Meritus Health in Maryland, worked with a late patient's family to prepare her memorial service—which she requested he perform—he asked for stories to share. Her niece shared a picture of the patient's wrist, along with those of her niece, sister, and daughter, all tattooed with the word “hope.” The family told the chaplain that it was him, and the conversations he had with the patient, that provided that hope.
He shared this story at her funeral, which her son attended drunk. “Because of losing his mom, that took him over the edge,” Corea says. “I didn't think he was listening.” But the son called him six months later to say he had stopped drinking and was attending Alcoholics Anonymous meetings. Corea told the man his mother would be proud of him and asked how he planned to make his resolve stick. He learned the son had listened at the funeral after all: “Last night I went to the tattoo parlor and had the word ‘hope’ tattooed on my wrist.”
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